It's time after-care for cancer patients got up-dated

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Macmillan’s medical director

hits out

No sooner had I written about assembly-line medicine, and how the Dept. of Health is blaming us, the PBP (poor Bxxxy patient) for lower survival rates post-cancer, compared with European countries,

than up comes Prof. Jane Maher , Medical Director of Macmillan, with some telling things to say about the way we are looked after once we finish hospital treatment.

What does Jane Maher say?

She feared 500,000 people’s symptoms for conditions, including osteoporosis and heart disease, are being missed by GPs.

GP’s lack of knowledge about the long-term side-effects of cancer drugs and a lack of communication with hospitals were to blame.

“Doctors are failing cancer patients ‘far too often’ by not spotting other medical problems caused by their treatment”, says Prof. Maher.  Lack of knowledge about the long-term side-effects of cancer drugs, and a lack of communication with hospitals, were to blame.  Which echoes what cancer patients say, commenting they feel ‘abandoned’ once they have left hospital.

‘GPs and oncologists are failing cancer patients far too often,’ she told The Guardian.

‘By not sharing vital information and recording [this] clearly on the patients’ medical records, they are putting a significant number of cancer patients at risk of having their work, health, relationships and home lives unnecessarily spoiled by long-term side-effects of their treatment.

‘GPs need to recognise that people who have had cancer may have health problems related to their treatment, and GPs are the best people to pick these up. But that doesn’t happen nearly enough at the moment.’

Doctors needed to ensure that cancer survivors’ medical records included more detail about their disease and type of treatment.

‘At the moment GPs aren’t recording whether someone has had chemotherapy or radiotherapy,’  partly because they don’t get enough information from hospitals, but also because they don’t realise why it’s important for them to do that.’

So PBPs  bumble along as best we may, and in the meantime officialdom pumps out mis-information:

Official Myths – from NHS/Dept. Health/GPs and Uncle Tom Cobley

Here are some official ‘sayings’;  they have little or no validity, but are taken as gospel by the medical profession:

  • Dept. Health says :It’s our fault that we have bad post-cancer survival rates as we have a bad take-up rate for screening. FactWorld Health Organisation say UK has one of the best rates in Europe for take-up of breast screening, etc.
  •  NHS/Consultants say: Once you’ve finished cancer treatment, “you’re clear”.                    Fact:  There is a risk of cancer survivors developing a second cancer
  • NHS tells you: Once you leave hospital, you have finished treatment.                                Fact : Long-term consequences can arise anything from a few weeks after treatment to many years later. There is no evidence that the development of late consequences decreases with increasing survival time after treatment.
  • NHS say: If you experience side effects, your GP is the person to consult.                                  Fact – my GP was more honest than most, admitting “you know more about cancer than I do”, when I went to ask about horrible side effects.  And no, he couldn’t help – it was back to the Internet.
  • Pharma company leaflets say:  if you experience side effects consult your GP.             Fact:  (and cue for hollow laughter)  T’aint so – most GPs have no training in dealing with side effects from these drugs.

Side effects NHS etc. brush under carpet

A survey by Macmillan Cancer Support in 2008 showed that while

44 per cent of cancer patients were not aware of the possibility of long-term physical side-effects

78 per cent of them admitted to experiencing at least one of a list of possible side-effects in the preceding 12 months, including: .

  • Fatigue
  • weight gain
  • lymphoedema
  • neuropathic pain
  • heart damage leading to an increased risk of cardiovascular disease
  • lung damage
  • bowel and bladder dysfunction
  • increased risk of osteoporosis
  • carpal tunnel syndrome
  • eye problems, etc. etc. .

And they seem to have forgotten skin problems, splitting and crumbling nails, etc. etc.

Many patients can also suffer psychosocial consequences, including anxiety and depression, memory loss and problems with concentration. This can lead to increased risk of job loss, financial problems, marital breakdown and divorce, and lower educational attainment for children and adolescents with cancer.

Feeble Excuses for bad care

Dr Clare Gerada, chair of the Royal College of General Practitioners said doctors needed help with the issue.

Admitting that GPs were generally unaware of the risks associated with specific treatments, she said: ‘If Prof Maher and the NHS tell us exactly what cancer someone has had, and what treatment, and what the possible risks are of that, and in a way that’s easy to understand, we will do things better.’

My personal view is, if we are aware, why aren’t doctors?  Surely we tell them enough times of the problems we are experiencing, but it seems they aren’t listening.  It’s time Dr. Gerada told her members to wash out their ears.

What’s being done?

The National Cancer Survivorship Initiative was launched in 2008 in response to the Cancer Reform Strategy, with the aim of co-ordinating a response to this challenge across all care settings.  This is a collaboration between Macmillan and the NHS.

Yet three years later, the website is still under development, and nothing seems to have been accomplished.

We still have the assembly-line system, which is way out-of-date – the NHS needs to follow what’s happening in the Personalised Medicine field, and STOP WASTING OUR MONEY on useless treatment.

But with side effects destined to increase, now that procedures such as Platinum-based treatments are getting more sophisticated,  doctors must be trained how to deal with our problems.

Or else Macmillan-funded GPs must be available to patients as and when needed – not locked away out of our sight.  It’s our donations that fund them – why can’t we book a consultation with one?

The latest Hormonal treatment, including the use of gonadotropin-releasing hormone analogues for prostate cancer and aromatase inhibitors for breast cancer, is associated with an increased risk of bone fractures due to osteoporosis.  NICE has recommended that women with early invasive breast cancer should have a baseline DEXA scan to assess bone mineral density.

Increasingly urologists are adopting the same approach with men with metastatic prostate cancer. Osteoporosis, when identified, should be treated with bisphosphonates and exercise.

What is role of GPs now?

GPs need to be aware of the possibility of late effects for patients with a history of cancer. When a patient presents with new symptoms,

  1. consider if they are related to the past cancer, its treatment or possibly the development of a new cancer.
  2. patient records should be clearly coded with details of past oncological treatments and also coded as ‘At increased risk of …’ if appropriate.
  3. Cancer specialists need to provide clear information to both patients and GPs about possible long-term consequences, and GPs need to ensure that information is appropriately recorded and coded on the patient’s GP records.
  4. Practices should create a register of those who have had oncological treatment including radio and chemotherapies, so that those patients can be highlighted on their computer system and alerts set.
  5. Proactively ask patients about possible treatment-related problems and potential psychosocial effects as part of any regular review, and consider offering patient information on long-term effects.
  6. Remember that second cancers are common in patients who have already had one cancer.  It is vital to give suitable lifestyle advice to all cancer patients to try to reduce that risk.
  7. Actively identify and manage other risk factors for those patients at increased risk of developing cardiovascular disease or osteoporosis.

Cancer follow-ups are a waste of time

According to Prof. Maher, the current follow-up system for cancer patients is a waste of time and needs to be completely overhauled.

Instead cancer patients should be given ‘the skills and knowledge to self-manage their condition, and provide support if needed, which would be far more effective at spotting re-occurrences of cancer.’

At the moment cancer patients who survive initial treatment enter what is called the ‘follow-up system’ – regular appointments to check that the cancer has not returned. Jane Maher, says: ‘The curent system is wasteful, ineffective, and not the best way to spot many recurrent cancers.’

There is surprisingly little evidence that this method is the best way to spot recurrences of cancer or the other possible long term health consequences of being treated for cancer.

Jane draws on recent work which ‘suggests that around 70% of recurrence for breast cancer could be detected by either patients noticing symptoms themselves or by surveillance testing alone, with a face-to-face appointment if needed.’

She continues ‘this is only possible if patients are helped to understand their illness, can access regular tests and know how and when to contact specialists if problems arise.’

One in five people living after treatment for cancer will develop long term emotional, psychological and physical problems that seriously affect their quality of life. Yet there are few, if any, NHS services specifically for cancer survivors.

The NHS needs to radically transform the way it provides support for patients following hospital treatment.  If enough patients tell their GP about Prof. Maher’s chilling words, perhaps we might get the attention and care we need, without going round and round the houses looking for joined up care.

And Jane, one thing you haven’t mentioned – patients need to be LISTENED to – and not dismissed out of hand when we query our treatment, or even offer a possible solution.  There is a thing called the Internet – and sadly many of us HAVE to learn how and where to look up treatment options – otherwise we would find outselves on the medical scrapheap.


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3 thoughts on “It's time after-care for cancer patients got up-dated

  1. Nirupama September 29, 2011 at 1:11 am Reply

    “My personal view is, if we are aware, why aren’t doctors?” – This was my first thought when I read about this. It is sheer common sense and most people whether cancer patients or not are aware of it in general. Newspapers and magazines are full of it. Am amazed GP’s expect to be spoon fed this information by the cancer experts. Once a patient has been treated for cancer and discharged by the hospital, it is for the GP to ensure their after care is all it should be. Perhaps GP practices should designate one doctor/nurse team just for cancer patients – they do need a higher level of physician care. Perhaps a whole new cadre of specially trained pharmacists should be formed to take an advisory role about the drugs/side effects/inter-effects and such issues, and each GP surgery should have one on board. As part of the reforms being touted for the whole of the NHS system, it might be an idea to expand the basic DNA structure of an NHS GP practice to include an on call cancer drug specialist pharmacist as well. Pie in the sky I know!

  2. ade balogun October 1, 2011 at 12:20 am Reply


  3. Christine October 9, 2011 at 8:05 pm Reply

    This is my retirement hobby- to help the sick and ailing and if I can help one patient, that will be a bonus to me.

    I do not mind giving workshops where cancer patients can find seace of mind, stress free and less anxiety within themselves.
    If you need to know more and require assistance I am here to help, no medicines – jsut using Zone Therapy so the body can balance itself.

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